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Canadian PKU and Allied Disorders (CanPKU+)

CanPKU+ supports individuals with HCU, MSUD,  PKU, UCD and other allied disorders through Community, Advocacy, Research, Educattion and Support.

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English - Please select EN from the preferences at the top right. B&acirc;tir les ponts (Building Bridges) 2026 est une conf&eacute;rence nationale ax&eacute;e sur les familles, organis&eacute;e par CanPCU+, qui rassemble des personnes vivant avec des maladies m&eacute;taboliques h&eacute;r&eacute;ditaires, leurs familles, ainsi que des cliniciens, chercheurs et partenaires de l&rsquo;industrie. Guid&eacute;e par les piliers CARES de CanPCU+ &mdash; Communaut&eacute;, D&eacute;fense des droits, Recherche, &Eacute;ducation et Soutien &mdash; cette fin de semaine vise &agrave; renforcer les liens, partager les connaissances et soutenir les familles partout au Canada. 📅 6 juin 2026📍 1212 Panet Street &nbsp;Montreal (H2L 2Y7). B&acirc;tir les ponts offre un environnement interactif et convivial o&ugrave; l&rsquo;exp&eacute;rience des familles rencontre les connaissances scientifiques. Conference Program 📍 Centre St-Pierre &ndash; Montr&eacute;alLe samedi constitue la journ&eacute;e principale de la conf&eacute;rence, ax&eacute;e sur l&rsquo;&eacute;ducation, les &eacute;changes et la communaut&eacute;.Le programme comprendra :&bull; Des s&eacute;ances pl&eacute;ni&egrave;res&bull; Des discussions sp&eacute;cifiques aux maladies (PCU, HCU, MSUD, UCD) Selon les personnes participantes&bull; Une programmation jeunesse&bull; Possibilit&eacute;s de tisser des liens avec des personnes, des familles et des partenaires de l&#39;industrie*&bull; Des activit&eacute;s de r&eacute;seautage communautaireLa soir&eacute;e du samedi est intentionnellement libre afin de permettre aux participants de retrouver des amis ou de profiter de la sc&egrave;ne culinaire dynamique de Montr&eacute;al. Programmation familiale B&acirc;tir les ponts est con&ccedil;u avec les familles au c&oelig;ur de l&rsquo;&eacute;v&eacute;nement.✔ Service de garde sur place pour les enfants de 12 ans et moins✔ Activit&eacute;s pour adolescents (selon le nombre d&rsquo;inscriptions)✔ Environnement d&rsquo;apprentissage adapt&eacute; aux famillesAucun repas n&rsquo;est servi dans l&rsquo;espace de garde. Votre inscription comprend :✔ Pause du matin, d&icirc;ner et collation en apr&egrave;s-midi le samedi✔ Acc&egrave;s aux s&eacute;ances pl&eacute;ni&egrave;res et ateliers✔ Activit&eacute;s de r&eacute;seautage * Tel que permis par la loi canadienne ** Des bourses de d&eacute;placement sont offertes selon la disponibilit&eacute; des fonds

Camp MagniPHEque 2026

Camp MagniPHEque is more than just a camp - it is a chance for individuals and families living with PKU, HCU, MSUD, and UCDs to come together in a supportive and welcoming environment. Over the course of the weekend, participants will enjoy age-appropriate activities, opportunities to connect with others who truly understand the rare disease journey, and meaningful moments of learning, laughter, and community-building.Whether you are newly diagnosed, navigating a new stage of life, or have been part of the community for years, Camp MagniPHEque offers a space to build friendships, share experiences, and create lifelong memories. Low-protein meals and snacks will be provided, and programming is designed to balance fun, relaxation, and education in a non-classroom setting.Join us in Saskatoon for an unforgettable weekend of connection, support, and community. We cannot wait to welcome you to Camp MagniPHEque 2026!g availability

Bâtir les ponts (Building Bridges)

Francophones : veuillez s&eacute;lectionner FR dans les pr&eacute;f&eacute;rences de langue en haut &agrave; droite. Building Bridges 2026&nbsp;is a national, family-focused conference hosted by CanPKU+, bringing together individuals and families living with inherited metabolic disorders alongside industry partners. Guided by the CanPKU+ CARES pillars &mdash; Community, Advocacy, Research, Education, and Support &mdash; the weekend is designed to strengthen connections, share knowledge, and empower families across Canada. 📅 June 6, 2026📍 1212 Panet Street in Montreal (H2L 2Y7). Building Bridges offers an intimate and highly interactive environment where community experience and scientific knowledge come together. Conference Program Saturday, June 6📍 Centre St-Pierre &ndash; MontrealSaturday is the main conference day focused on education, community connection, and shared learning.Sessions will include:&bull; Plenary presentations&bull; Disorder-specific discussions (PKU, HCU, MSUD, UCD) Based on attendees&bull; Youth programming&bull; Opportunities to connect with individuals, families and industry partners*&bull; Community networkingSaturday evening is intentionally left open so attendees can reconnect with friends or explore Montreal&rsquo;s vibrant dining scene. Building Bridges is designed with families at its core. ✔ Onsite childcare for children 12 and under✔ Teen programming (numbers permitting)✔ Family-friendly learning environmentNo food is served in the childcare space. Your registration includes:✔ Saturday morning break, lunch, and afternoon snack✔ Access to all plenary sessions and breakouts✔ Community networking * As permitted under Canadian law ** Travel Scholarships available based on funding availability

Building Bridges - Bâtir des ponts

Advocacy Pillar&nbsp;Advocacy is about ensuring the voices of patients, families, and caregivers are heard where it matters most &mdash; with policymakers, regulators, and healthcare decision-makers. Contributions to advocacy help CanPKU+ to:<ul data-end="2003" data-start="1578" fr-original-style="" style="box-sizing: inherit;"><li data-end="1729" data-start="1578" fr-original-style="" style="box-sizing: inherit;">Engage with Health Canada and other regulatory agencies to support approval and access to treatments, such as the recent work on Sephience for PKU.</li><li data-end="1844" data-start="1730" fr-original-style="" style="box-sizing: inherit;">Mobilize the community to provide input on drug submissions, healthcare policies, and patient access programs.</li><li data-end="2003" data-start="1845" fr-original-style="" style="box-sizing: inherit;">Raise awareness of challenges faced by individuals with PKU, HCU, MSUD, and UCDs, ensuring that decisions affecting care are informed by real experiences.</li></ul>By supporting advocacy, you help shape a healthcare system that prioritizes rare disease needs and improves quality of life for our community.

Advocacy Pillar Advocacy is about ensuring the voices of patients, families, and caregivers are heard where it matters most — with policymakers, regulators, and healthcare decision-makers. Contributions to advocacy help CanPKU+ to:Engage with Health Canada and other regulatory agencies to support approval and access to treatments, such as the recent work on Sephience for PKU.Mobilize the community to provide input on drug submissions, healthcare policies, and patient access programs.Raise awareness of challenges faced by individuals with PKU, HCU, MSUD, and UCDs, ensuring that decisions affecting care are informed by real experiences.By supporting advocacy, you help shape a healthcare system that prioritizes rare disease needs and improves quality of life for our community.

Donate to the Advocacy Pillar

PCU et Maladies Apparentees Canada Inc. (CanPCU+) est très reconnaissant de toutes les donations reçues de notre communauté. Elles nous aident à pouvoir continuer à offrir des programmes, de l'éducation, du soutien et de la défense des droits pour les personnes atteintes de HCU, PCU, MSUD, UCDs et de troubles rares au Canada.Les donations aident également à garantir que nous disposons de fonds pour continuer à offrir des bourses de voyage à autant d'individus et de membres de familles que possible, afin de pouvoir assister à nos programmes éducatifs en personne - où ils peuvent non seulement en apprendre davantage sur la vie avec leur trouble rare, mais vraiment ressentir la valeur que cette incroyable communauté apporte à chacun.Nous vous remercions de tout cœur d’envisager CanPCU+ lorsque vous contribuez à notre communauté.** CanPCU+ est actuellement désigné comme une organisation à but non lucratif. Nous n'avons pas le statut d'organisme de charité et, à ce titre, nous ne sommes pas en mesure de fournir de reçus fiscaux. **

PCU et Maladies Apparentees Canada Inc. (CanPCU+) est très reconnaissant de toutes les donations reçues de notre communauté. Elles nous aident à pouvoir continuer à offrir des programmes, de l'éducation, du soutien et de la défense des droits pour les personnes atteintes de HCU, PCU, MSUD, UCDs et de troubles rares au Canada.Les donations aident également à garantir que nous disposons de fonds pour continuer à offrir des bourses de voyage à autant d'individus et de membres de familles que possible, afin de pouvoir assister à nos programmes éducatifs en personne - où ils peuvent non seulement en apprendre davantage sur la vie avec leur trouble rare, mais vraiment ressentir la valeur que cette incroyable communauté apporte à chacun.Nous vous remercions de tout cœur d’envisager CanPCU+ lorsque vous contribuez à notre communauté.** CanPCU+ est actuellement désigné comme une organisation à but non lucratif. Nous n'avons pas le statut d'organisme de charité et, à ce titre, nous ne sommes pas en mesure de fournir de reçus fiscaux. **

Support &amp; Community PillarThe sense of connection and belonging is especially important for families affected by rare disorders. CanPKU+ fosters a supportive community through programs and initiatives that:<ul data-end="3590" data-start="3164" fr-original-style="" style="box-sizing: inherit;"><li data-end="3253" data-start="3164" fr-original-style="" style="box-sizing: inherit;">Provide peer-to-peer support networks, mentorship opportunities, and family meet-ups.</li><li data-end="3356" data-start="3254" fr-original-style="" style="box-sizing: inherit;">Offer emotional, social, and practical guidance for navigating life with PKU, HCU, MSUD, and UCDs.</li><li data-end="3468" data-start="3357" fr-original-style="" style="box-sizing: inherit;">Celebrate milestones and achievements, and honor individuals in the community through campaigns and events.</li><li data-end="3590" data-start="3469" fr-original-style="" style="box-sizing: inherit;">Create spaces for families to share experiences, ask questions, and find encouragement in a network of understanding.</li><li data-end="3590" data-start="3469" fr-original-style="" style="box-sizing: inherit;">Offering programs to connect such as events and education.</li><li data-end="3590" data-start="3469" fr-original-style="" style="box-sizing: inherit;">Provide welcome kits to those who are newly diagnosed and returning to care&quot;</li></ul>Donations to support and community programs directly enhance the well-being of patients and families, helping them feel connected, heard, and supported every step of the way. Welcome kits are distributed via Metabolic Clinics who treat those with our disorders. Ask you clinic for yours!

Support & Community PillarThe sense of connection and belonging is especially important for families affected by rare disorders. CanPKU+ fosters a supportive community through programs and initiatives that:Provide peer-to-peer support networks, mentorship opportunities, and family meet-ups.Offer emotional, social, and practical guidance for navigating life with PKU, HCU, MSUD, and UCDs.Celebrate milestones and achievements, and honor individuals in the community through campaigns and events.Create spaces for families to share experiences, ask questions, and find encouragement in a network of understanding.Offering programs to connect such as events and education.Provide welcome kits to those who are newly diagnosed and returning to care"Donations to support and community programs directly enhance the well-being of patients and families, helping them feel connected, heard, and supported every step of the way.Welcome kits are distributed via Metabolic Clinics who treat those with our disorders. Ask you clinic for yours!

Donate to the Support and Community Pillar

Research Pillar -&nbsp;While CanPKU+ does not conduct clinical research ourselves, we play a crucial role in supporting and advancing scientific progress for PKU, HCU, MSUD, and UCDs. We contribute by:<ul data-end="1056" data-start="637" fr-original-style="" style="box-sizing: inherit;"><li data-end="727" data-start="637" fr-original-style="" style="box-sizing: inherit;">Supporting patient registries and databases that track health outcomes and treatments.</li><li data-end="727" data-start="637" fr-original-style="" style="box-sizing: inherit;">Creating and hosting the &nbsp;Canadian PKU Registry (currently for pediatric patients but expanding when funding allows to include adults)</li><li data-end="835" data-start="728" fr-original-style="" style="box-sizing: inherit;">Participating in research advisory panels, providing the patient and family perspective to researchers.&nbsp;</li><li data-end="835" data-start="728" fr-original-style="" style="box-sizing: inherit;">Participating and education about Family Engagement in Research</li><li data-end="945" data-start="836" fr-original-style="" style="box-sizing: inherit;">Helping provide some Canadian dollars thanks to this fundraising to help fun programs like HCU Network America&rsquo;s Race for Research to accelerate discovery of new therapies.</li><li data-end="1056" data-start="946" fr-original-style="" style="box-sizing: inherit;">Sharing data and insights with clinical partners to help improve care strategies and treatment approaches.</li><li data-end="1056" data-start="946" fr-original-style="" style="box-sizing: inherit;">Bringing Research opportunities to our community (education about trials etc)</li></ul>Donations to this pillar empower the rare disease community by helping researchers, clinicians, and organizations access the information and resources they need &mdash; and can also be made in honor of someone you care about, linking their legacy to advancing medical knowledge.

Research Pillar - While CanPKU+ does not conduct clinical research ourselves, we play a crucial role in supporting and advancing scientific progress for PKU, HCU, MSUD, and UCDs. We contribute by:Supporting patient registries and databases that track health outcomes and treatments.Creating and hosting the Canadian PKU Registry (currently for pediatric patients but expanding when funding allows to include adults)Participating in research advisory panels, providing the patient and family perspective to researchers. Participating and education about Family Engagement in ResearchHelping provide some Canadian dollars thanks to this fundraising to help fun programs like HCU Network America’s Race for Research to accelerate discovery of new therapies.Sharing data and insights with clinical partners to help improve care strategies and treatment approaches.Bringing Research opportunities to our community (education about trials etc)Donations to this pillar empower the rare disease community by helping researchers, clinicians, and organizations access the information and resources they need — and can also be made in honor of someone you care about, linking their legacy to advancing medical knowledge.

Canadian PKU and Allied Disorders (CanPKU+)

Canadian PKU and Allied Disorders (CanPKU+)

Past events

Past events

Camp MagniPHEque 2026

Building Bridges - Bâtir des ponts

More ways to support us

Donate to the Advocacy Pillar

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Donate to the Support and Community Pillar

Donate today

Donate to the Research Pillar

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